Choosing a Chemo Center

Nanpop · November 2016

Hi Everyone,

I am stuck between MSKCC (Sloan satellite office on Long Island, NY) and another place on Long Island.

Both places have the same protocol. However Sloan's approach is no port and minimal medications. They give a steroid and an anti-nausea drug. They wait to see what side effects develop and then treat. The other MO gives all the medications upfront and has a great reputation for managing side effects and closely monitoring the patient. Sloan does not.

Treatment consists of AC -T and Taxol does dense over 4 months.

Sloan recommended an additional drug to prevent bone metastasis.

How do I choose?

Claire_in_Seattle · November 2016

Go with the port and the monitoring. The port is a pain, but really helpful not just for the infusions, but also for blood draws which you will need each time. Ask about the other drug as there is some survival benefit, or at least ask why not recommended. Listen to the response.

The good news about Dose Dense is that you finish sooner on top of the survival benefit. I am thinking that the non MSKCC center also routinely does Neulasta. This would be a good thing.

I did six of each as part of a clinical trial for dosing. I did not do the bone drug as had just done $20k of dental work and osteonecrosis of the jaw is a known side effect. I made sure I got out and exercised every single day.

You will be done before spring and able to enjoy the summer. Did anyone mention cold caps? You might want to consider those as well. Good luck! - Claire

Kattysmith · November 2016

Hi Nanpop,

I'm being treated at MD Anderson in Houston. I had AC infusions late last year / early this year. I wasn't offered the option of a port, although AC is notoriously hard on the veins (mine are now shot...), but that may have been because my Stage IV cancer was really aggressive and maybe they didn't want to wait. I was too much in shock to question much of anything right then!

BUT, the good side was that they front-loaded me for an hour before each infusion with all sorts of meds: anti-nausea, Ativan, steroids and I didn't have any debilitating side-effects. I was / am so grateful for that, so that's something to consider, especially if you are working or have kids.

Before your treatments start, be sure to start pushing water and and fiber for a couple of days to prevent constipation. I learned that from Ann Silberman's blog "But Doctor, I Hate Pink" and it really helped.

My onc added monthly Exgeva injections this summer for bone support.

You are smart to do your research and best wishes with your choice!

Connie1230 · November 2016

I've gotta say I'd go with the other one....not the Sloan Kettering affiliate. Patient support is so important and why on earth anyone would want to take a wait and see attitude on side effect, I don't know. Then if you have severe side effect, you have to reach them, wait for a prescription to be called in and wait for it to be filled and go get it. That could mean several hours of misery and if you're trying to work through this or have young children, this makes it that much more difficult. I hate, hate, hate my port but I am so glad I have it. I was dead set against it but the dr said my veins just couldn't hold up without one. It does make it so much easier

rainnyc · November 2016

For what it's worth, I have been very satisfied with Sloan. It's true that I didn't get a port, and that sometimes meant that I had to be stuck a few times. And my Taxol was weekly, so those sticks added up. Still, that wasn't a huge deal for me. I was happy not to have so many pre-meds, and my experience with Sloan is that they really think twice before offering drugs. The pre-meds themselves can have side-effects; I really hated the steroid crash, for instance. The patient support has been excellent, and there were times, especially early in treatment, when I was talking to the oncologist's office nurse on a daily basis. I've had incredibly helpful conversations with a social worker, a nutritionist, and, when my ACA plan ran into glitches (long story), the head of the insurance department.

In general, the nurses are spectacular: kind, compassionate, knowledgable, and pragmatic. And I really appreciate the unified approach, in terms of scheduling of treatment and the ability of docs from various departments to communicate effectively (as someone who has been treated at various times by a medical oncologist, a radiation oncologist, and two surgeons).

So.... I think I've had some of the best medical care of my life at Sloan.

That said, take all of these recommendations with a grain of salt, because in the end, it's all about who you feel comfortable with. Good luck!

Kay_G · November 2016

Do you have excellent veins? If not, i would go for the port. I would also be proactive and take the premeds. You have a heavy duty course if chemo. You'll likely need them. I had the same chemo. You can back down a little if you feel you don't need them after the AC. Good luck with everything

tangandchris · November 2016

I'd go with the port and the preemptive medications....better safe than sorry. I'm surprised that Sloan doesn't do those things, but I guess there are reasons for each approach.

Kicks · November 2016

I know absolutely nothing about any facility in NY so can't make any comment on a particular center.

Have you asked about getting a port? Adriamycin (aka Red Devil) is VERY hard on veins. If you do not have port, have you asked about what/where veins will be used? It is recommended that arm/veins not be used on mast. side as vein access (taking BP and getting injections) can 'encourage' LE (lymphedema) to present. As you had a BMX that means both sides. (Request a referral to an LET [LymphEdema Therapist] for an evaluation and education before it develops - IF it ever does.)

When you have blood draws - is it hard to get a draw done? If it is hard - then it will be hard to establish an IV for infusions.

My TX plan was a bit different than most as I did neoadjuvant (4 DD A/C) and adjuvant (12 weekly Taxol) - so a total of 16 infusions. I have great veins and as I had a UMX I knew that post surgery I would only be able to use one side for blood draws/etc., I wanted to be sure to keep them 'good' for the future if ever needed - so to me port was the only way to go. My blood draws were never done via my port as it takes an educated RN/PA/NP/Dr to access them (not a Tech) as they have to be flushed before blood can be drawn and then the heparin block reestablished after. So with my vein, I wanted to be sure it stayed great in the future for use for blood draws/etc.

I was not offered a drug to "prevent bone metastasis" during Chemo - the Chemo is fighting cancer cells throughout the body while doing it. I was given a Neulasta shot the day after each A/C infusion to encourage white cell production. Did not have it on Taxol and was told that as long as my white cell count stayed up - no need for it.

Ask the BC Nurse Navigator at whichever facility you decide on (or your local ACS) about the 'Look Good - Feel Better' class. It is class for women who are going through Chemo that gives info about skin care, wigs/scarfs/etc., doing make-up with the challenges that come with no eyebrows and eyelashes, nail care and meeting/realizing that other women ate going through the same things. When I did it, I had not lost hair yet but my Navigator had given me a really super cute wig - Hubby and Son saw it and started laughing - I had to agree with them - it wasn't ME! I took it to the class to see if it was right for someone else - it was perfect for a beautiful lady who started crying when she saw herself in it (we were all in tears). I wound up getting a wig from the Master Cosmetologist who was doing the class that had been sent to her in a box of wigs from a manufacturer a few days before that she thought she'd never find the 'right' person for - but it was perfect for me. It's strange sometime how 'things work out'.

Sorry for rambling on so - I do tend to do that at times.

Choosing a Chemo Center

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